Questions for those who experienced Peripheral Neuropathy

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Puggle
Puggle Member Posts: 88 Member
in Head and Neck Cancer #1
My husband completed treatments (32 rads/3 cisplatin) on August 22nd. Approximately 1 month later he started getting the numbness in his hands and feet, but nothing extreme. All of his doctors said that it was most likely a delayed side effect of the chemo but didn't offer any solutions. It has gotten progressively worse. He is now numb up to his elbows and knees. He has problems using the cell phone, using a computer mouse, writing and even using a fork for eating. We have made an appointment on our own to see a neurologist and after repeated requests have gotten a referral from his PCP for physical and occupational therapy. The neurologist appointment and therapy start next week.

I know that everyone is different but it would be helpful to hear what others have gone through. For those of you who have experienced this:

How severe were your symptoms?
How quickly did they progress?
Did the neuropathy eventually resolve itself?
How long did it take to resolve?
If not, any advice on how to handle daily activities?

Thanks in advance for any feedback. This is so difficult... one step forward, 3 backward. We were so happy when he could finally start enjoying regular foods again and now this starts. To quote Rosanne Roseannadanna... It's always something!!!

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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    Delayed neuropathy
    to cisplatin is not the most common result, but it happens. You need the neurologist involved. Whether this will be treatable, or whether it will spontaneously reverse its course is the issue, and those issues are best left to the help of a professional. These treatments are rough, but we all understand that, as the disease they are used to treat is a rough one to begin with.

    Wishing you both the best.

    Pat
  • timreichhart
    timreichhart Member Posts: 194
    #3
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    longtermsurvivor said:

    Delayed neuropathy
    to cisplatin is not the most common result, but it happens. You need the neurologist involved. Whether this will be treatable, or whether it will spontaneously reverse its course is the issue, and those issues are best left to the help of a professional. These treatments are rough, but we all understand that, as the disease they are used to treat is a rough one to begin with.

    Wishing you both the best.

    Pat

    I have Peripheral Neuropathy also
    Well I have Peripheral Neuropathy also and it was found out by doing a balance test from my ent doctor and you dont need a neurologist involved but its good if you do but again if your seeing a ENT doctor ask about a balance test.
  • Pam M
    Pam M Member Posts: 2,196
    #4
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    Not Delayed for Me
    Neuropathy symptoms set in during induction chemo - hands and feet only. After chemo ended, it gradually improved(more quickly for hands). I notice no neuropathy in hands now, a little in the feet. For me, it was always worse if I let myself get chilly. I seriously wore two pairs of socks under men's houseshoes indoors. Glad you're seeing a neurologist. Hope it goes well.
  • NJR
    NJR Member Posts: 82
    #5
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    answer
    How severe were your symptoms?

    Severe enough to be a nuisance. My numbness only affects from the finger tip to the first joint in my fingers and one thumb. It makes certain tasks a pain but I got used to it.
    ----------
    How quickly did they progress?

    It appeared suddenly several weeks after chemo was over and has remained unchanged for 2 months or so now.
    ------------------
    Did the neuropathy eventually resolve itself?

    Not as of yet. Chemo doc says that it can be permanent but usually repairs itself over time. He said nerves are among the slowest regenerative parts in our body
    ---------

    How long did it take to resolve?

    Depending on the damage done he said it could be as much as a couple of years if it does come back.
    ---------

    If not, any advice on how to handle daily activities?

    Pay close attention to what you are doing around the stove and think twice before you use your finger to test anything hot. You will adapt very quickly. Someone mentioned cold. That is a major concern also. Be sure and wear gloves when scraping ice from the windshield or shoveling snow. No feeling in your fingertips can lead to over exposure and frost bite before you know it.

    Oh and last but not least...I don't care what Cheryl Crow says. Use more than one square of toilet paper! ;-)
  • Puggle
    Puggle Member Posts: 88 Member
    #6
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    Thanks everyone for the input!
    The neurologist confirmed that the neuropathy my husband is experiencing was from the chemo. He's keeping him on the gabapentin for now but he increased the dose a bit. We also discussed a few other meds that could be used but all of them will only help with pain and not the numbness. If the gabapentin doesn't seem to help any more at least we have some other options. He wouldn't even attempt to say if this will clear up or not but he did say that what ever numbness is still there after a year would probably be permanent.

    One PT and OT so far. We'll give it a try for a couple of weeks and then hopefully be able to do the exercises at home. Way too expensive co-pays to continue on with that for too long!
  • ruckrova
    ruckrova Member Posts: 2
    #7
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    Puggle said:

    Thanks everyone for the input!
    The neurologist confirmed that the neuropathy my husband is experiencing was from the chemo. He's keeping him on the gabapentin for now but he increased the dose a bit. We also discussed a few other meds that could be used but all of them will only help with pain and not the numbness. If the gabapentin doesn't seem to help any more at least we have some other options. He wouldn't even attempt to say if this will clear up or not but he did say that what ever numbness is still there after a year would probably be permanent.

    One PT and OT so far. We'll give it a try for a couple of weeks and then hopefully be able to do the exercises at home. Way too expensive co-pays to continue on with that for too long!

    A few hints
    Hi

    I have peripheral Neuropathy in both my hands and feet , its worse in the feet after chemo last year .

    Heres A few suggestions that he may have already found out .

    Do any exercise or tasks that involve walking with your husband in the morning as the pain is increased over the day ,

    Get him to rest with his feet suspended in mid air . so they don't touch any surface .

    I now practice meditation and when I get to a state of non awareness the pain is off , this is very close to being a sleep and many times I am .

    Having said that , I have had dreams where giant centipedes are biting my hands and feet so I guess I can feel it when im asleep too , some times .

    Be aware that when he is getting up from sitting his feet may not feel as if they are connecting with the ground in the normal way .

    Also be aware that driving is also effected because of the loss of feeling in his feet to control the brakes , particular in bumper to bumper traffic when very minor adjustments of the braking is necessary for a long time .

    Hope this is of help

    and remember that it is always there and may not ever repair it self , I hope this is not the case .

    I am 49 and have returned to playing veterans basket ball , now just for half the game and I stagger out ofter the match but I am still doing something I like.

    best of luck

    Ruckrova

    also see
    http://csn.cancer.org/node/149876#comment-1217159

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